RESEARCH – How Do I Love Thee? Let Me Count The Ways

As a patient, the scale of the effort directed at liver disease that has been put on display at AASLD, EASL and the NASH Summit recently was striking. Not being a veteran goer to this kind of event it was all a bit overwhelming. As an individual the scope of the activity is very difficult to wrap ones arms around. Interestingly, there is a great sense of gratitude attached to the experience of observing all of the effort that is being directed toward solutions that might one day mean life or death for me as an individual. The scale of the events is too big for me to digest in a meaningful way but are a powerful testament to the contributions of the health community to the best of us as a society.

I love thee to the level of every day’s most quiet need.

The day to day burden of living with chronic disease, of which cirrhosis is but one, cannot be appreciated by those who are not unwell. Even those in the profession see mostly the surface and would go quickly mad if they were to allow themselves to be sucked into the suffering of those they care for in any deeply personal way.

For those who seek to live a life to the best way they can, a most quiet need is hope. A sense of hope that there may yet be help or at least a bit of relief which is so roundly promised by the vast engine of discovery on display at the research conferences is something that I hope to be able to pass along to the thousands of patients whose lives we touch here through the Foundation.

I love thee freely with passion put to use.

One of the things that we seldom reflect one is the unique character of the people who labor in the caring professions. We all understand in the current moment there is a great competition within the niche that is liver disease. There is a focus on the vast profit potential that exists as a result of how our evolving societies have adopted unwise practices. That certainly drives a lot of the effort demonstrated by the research community today. We should step back, however, and realize that for most there are not really vast monetary rewards attached to success in treating our diseases. The body of the profession is sustained by the promise of reward but it lives because of a passion for health and a better life for us all. Interacting with the people who devote so much of their life energy to at least a vision of the greater good is really a life affirming experience. When I talk with the researchers who devote decades to a tiny slice of the problem and who grapple with the most complex and intractable questions on the edge of knowledge, I am honored to have a chance to know such people if only for the briefest of moments.

I love thee with the breath, smiles, tears, of all my life.

When I sought to describe the experience of attending cutting edge research conferences, I assumed I would be drawn to reflect on the intricacies of the science; to marvel at the skill of the researchers; to be amazed and surprised by all the enterprise that is being displayed. I find, however, that those are just the jots and tittles that surround the substance of enterprise. When we think about what it means to be a society or reflect on how we, as people, aspire to a better world with more good times for most, a beacon truly is the medical community. When we scrub away all of the untidiness, the human failings, the unfairness that is fundamental to life, what is left is truly good. There can be no better testimony to our better natures than the impulses which guide so many people who are the soul of what is community. I was honored to play just the tiniest part in this celebration of life that is displayed so convincingly by the research community.

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